Tonia Nickolaus is a petite, 34-year-old brunette who calls herself a human guinea pig.
When she was 10-years old doctors discovered she had leukemia. For the next three years and two months they pumped high doses of toxic drugs into her body in a desperate effort to save her life.
"At the time I was diagnosed (nearly) 25 years ago, children weren't surviving. The rate was so low that I was one of the top survivors. And my chemotherapy was experimental. They had no idea if I was going to make it or not on that protocol. But I did. So then they used that for other children which was good," she says.
Nickolaus has kept in touch over the years with doctors at the University of Minnesota where she was treated. And she's taken every opportunity she's offered to participate in follow-up research studies that track her progress.
"They didn't know what was going to happen after all that chemo and so that's why they do the long-term follow-up now, to see what happened to us. So it's a lot of wonder, what's going to happen. I think the doctors too have no idea up to this point, cause things are starting to show up in us."
The first thing to show up in Nickolaus was skin cancer.
"What I want to look at first is where you had that basil cell removed on your scalp," says Dr. Daniel Mulrooney, who's handling her long term care.
She discovered the cancer last June on her forehead. It was an aggressive form of the disease, but she caught it early and had specialists at the University remove it.
"And that's healed just fine," Mulrooney says. "Any other lesions you have found that are concerning to you?"
"No," Nickolaus says. "I usually get things removed if I'm concerned."
Mulrooney praises her for catching the skin cancer early and reminds her to stay out of the sun and check her skin monthly for any new signs of the disease. He then slips on his stethoscope and listens to Nickolaus's lungs.
"Just some nice deep breaths, right in and out, through your mouth. Perfect. Perfect," he says. "It sounds just fine. I can hear the heart murmur, but the rest of it sounds just fine."
The heart murmur is actually another sign of trouble that worries Nickolaus far more than the skin cancer.
"I found out I had heart disease in November. One of the chemotherapies that I received damaged my two valves. And they knew that at the time, back when they gave it to me. But at that time they wanted to cure the cancer and deal with me later."
University doctors have long anticipated these kinds of complications. Mulrooney didn't treat Nickolaus as a child, but he says her medical records paint a pretty clear picture of what she faces.
"She had a total dose of 360 milligrams per metered square, meaning her body surface area or her size. And that's getting to be an elevated dose which might start to have cardiac effects," Mulrooney says. "In addition to that, she did receive radiation therapy to her chest which also involved the heart. So she actually has two risk factors that I think have contributed to the effects that she's seeing with her heart."
For the past couple months Nickolaus has been taking two drugs that help relieve pressure on her heart valves. Still, her condition might require valve surgery or even a possible heart transplant some day.
Nickolaus seems to be taking this latest health challenge in stride. But that doesn't mean she isn't disappointed.
"I am," she says. "I didn't think it would happen until I was older if it was going to happen. But I deal with it and I just take life."
"I'm just glad I'm here. That's probably the biggest thing because 25 years ago I could have not have made it. I'm just very happy that I'm here and I can at least fight what I'm getting. And I'm glad that I know what I have to fight, instead of sitting there not knowing. Now I know," she says.
Like many childhood cancer survivors, Nickolaus knew she was at higher risk for some diseases. But it had been so many years since her illness, she didn't think much about it anymore. In fact she even ignored signs that her heart was getting weaker. She was frequently winded and occasionally dizzy. Still, she didn't realize she was sick.
But when she came to the University to get her skin cancer treated, doctors recommended that she schedule an echo cardiogram as part of her routine long-term follow-up care. If Nickolaus hadn't had that echo cariogram when she did, her heart valve damage probably would have worsened. She might have even suffered a heart attack. She's thankful U of M doctors knew that they should look for the problem.
"If I went to a regular doctor they really don't know. And I've talked to other doctors and they just kind of look at me like maybe they somewhat know, but not really," she says.
Dr. Mulrooney says the university has been trying to raise awareness among childhood cancer survivors about these potential health issues. They've sent brochures and screening reminders to patients. On Saturday, the university holds a free day-long seminar focusing on long-term risks and ways that patients can intervene early.
"We certainly don't want to frighten them and we don't want to give them a list of effects or new things that might happen to them. They're all cancer survivors," he says.
"They've been through traumas in their life that most of us have never experienced and hope not to. But the goal really here is to help provide them with education about their health. In our case most of these patients were treated quite young and as children and are really unaware of what the specifics of their therapy was and what the specific risks might be." Some patients aren't ready for the discussion yet, while others are eager to learn more.
Twenty-three-year-old Jeff Schultz is among the eager. Schultz was diagnosed with leukemia four years ago and only recently finished with his chemotherapy. He says getting well has been his main concern. But he's starting to think about the future.
"I hear little bits and pieces but my attitude has just been (focused) on today and getting through today," he says.
Schultz says from what he's heard so far, the chemotherapy drugs he received sometimes causes kidney and liver problems. But he knows he needs more information than that. That's why he's going to the University's seminar.
"Throughout this whole experience with cancer if you're nervous about what the future has for you, that can just eat away at you. Stress is horrible with a disease like this," he says. "The more positive outlook you have, the more easy-going you are about it, I think it just can increase your ability to fight the disease and your ability to overcome negative side effects too. So you know I look at it as a positive event to try to learn more about you know how I can improve my life after beating cancer. So look for some tips, some advice, just basic long-term follow-up issues that might be important."
Schultz will also add his name to the University's Childhood Cancer Survivor study.
More than 14,000 patients have participated so far and the university has learned a lot about how they are faring years after their original diagnosis. Dr. Mulrooney says the database gives researchers enormous insight as they try to figure out more effective and safer ways to treat cancer patients.
"We may be coming to a day when we need to start looking backwards and say can we reduce the treatment, the intensity of the treatment, keep the same survival and hopefully reduce the effects that we're seeing years following treatment," he says.
The survivor study currently includes data on patients who were treated between 1970 and 1986. But there have been significant treatment advances in the years since. The U of M intends to reflect some of those changes by updating and expanding its patient data. It recently received a new five-year grant that will allow researchers to add survivor data through 1999.